Healing the Hurt
Thank you for the excellent article, "Anger Management," in the June/July 2015 issue. In caring for our daughter after her brain surgery and during her chemotherapy treatments, I felt anger, distress, betrayal, and discouragement, particularly when she asserted that I didn't help her or believe in her abilities or encourage her writing projects. Although I knew intellectually that it was a difficult situation for her, I didn't know that neurologic disease could bring out such behavior. I wish I had known more about patients going "to extraordinary lengths to protect their distorted perceptions of reality" and the strategy of saying, "I love you too much to argue." About two and a half years after surgery, our daughter was able to get a job again and to get a little apartment with a man she eventually married. Sadly, she died five years after her diagnosis. I still cry about the loss of this beautiful, talented 41-year-old woman, but reading the article helped me feel less bothered by the hurtful things she said about me and her father during her diagnosis and treatment. - Susan B. Manchester, CT
RLS Response
Thank you for your article on restless legs syndrome/Willis-Ekbom disease (RLS/WED) ("Sleep Thief," June/July 2015). I have the disorder (it runs in my family) and have found three remedies that work for me, which I'm sharing in the hopes that they will help others. I exercise regularly, walking at least three miles three days a week. I also stretch my thigh muscles and use a leg extension machine at my local gym. Lastly, I take a magnesium supplement each morning, as suggested by my doctor. - Jim DuLaney, Houston, TX
Your article on RLS/WED, while informative and interesting, was also depressing and discouraging. I recently began taking Requip (ropinirole), a dopamine agonist, for RLS/WED, and your article suggests that these drugs can cause compulsive behaviors such as obsessive shopping, eating, gambling, and sex addiction. A friend of mine has been on Requip for years and has not developed any compulsive behaviors or addictions. Is there an upside to these medications? - Suzanne L. Vrable, Campbell, OH
I am 57 years old and had my first bout with RLS/WED as a 17-year-old. Your article was informative, but it failed to mention clonazepam, a medication that does not affect the brain's dopamine levels. My general practitioner first prescribed a low dose to take at bedtime in 2000. I am now under the care of a neurologist at Johns Hopkins (for a meningioma), who agrees with this course of treatment since it works so well and has no side effects for me. - April Hancock, Bryans Road, MD
THE EDITOR RESPONDS: Thank you for your thoughtful comments. Research shows that regular exercise can help treat symptoms of RLS/WED. And studies show that while some people may experience side effects from dopamine agonists, many others can take these drugs safely without side effects and find relief from their symptoms. Benzodiazepines like clonazepam may be helpful for those with mild or intermittent symptoms, according to the National Institute of Neurological Disorders and Stroke, but they can cause daytime sleepiness and may induce or aggravate sleep apnea. We encourage readers to discuss the risks and benefits of all treatment strategies, including exercise, with their doctors.
Trial Period
Your primer on clinical trials ("Moving Science Forward," June/July 2015) was excellent. You wisely informed volunteers about what to expect when they sign on for a clinical trial, including that research methods ensure that patients enrolled in studies are well and safely treated. Thank you for an informative presentation for the lay reader. - Leo Shatin, PhD, Charlottesville, VA
Accepting Epilepsy
I admire Alysse Mengason, who wrote about how she and her husband came to accept her epilepsy ("The Bunny Slope," June/July 2015), for playing the hand she was dealt. - Basilio Bruno, Lakewood, OH
Stroke Sense
I enjoy your magazine, but your reporting on stroke recovery ("A One-Two Punch to Stroke," April/May 2015) seems light, especially considering it is the leading cause of disability worldwide. We need a global stroke research center staffed with talented doctors who keep all treatments on the radar, rank them by degree of promise, and disseminate that information to the public. If this makes a dent in the damage created by stroke and offers encouragement to patients and families, it would be a sound investment. - Frank Todd Winninger, Coral Springs, FL
Bright Idea
I really enjoyed "Calm Your Mind" in the April/May 2015 issue. I was wondering whether you've ever considered running a regular column on nutrition and brain health. It could be tied to exercise, as well. There's so much literature supporting the idea that a healthy diet and exercise can help reduce the risk for certain brain conditions and improve general brain health. I think your readers would get a lot of out of it. I know I'm interested in anything I can do to keep my brain as healthy as possible. - Corey Jansen, Des Moines, IA
THE EDITOR RESPONDS: We are committed to covering brain health in our "Healthy Brain" column, which is also available online. And on our Neurology News blog, we cover the latest neurology research, including posts on how diet and exercise affect brain health.
Nerve-wracking
Four years ago, I started developing peripheral neuropathy. It took me three years of enormous effort to find a neurologist who was interested enough in my case to give me a diagnosis: small fiber peripheral neuropathy.
Peripheral neuropathy takes a back seat, in terms of news coverage and research, to more well-known neurologic diseases, such as multiple sclerosis. People like myself, with no effective painkiller, are desperately hungry for this neurologic condition to receive some attention-and for experts to explain why there is no hope anytime soon for chronic pain. - Phyllis Austin, Brunswick, ME
THE EDITOR RESPONDS: Thank you for your comments. Please see "Rethink Chronic Pain" on page 10 for some strategies for dealing with pain. We will continue to feature articles on research and treatments for neuropathy and chronic pain in upcoming issues. In the meantime, you may find it helpful to look through our past articles on neuropathy.
Polio Survivors
I would like to see articles about post-polio syndrome. There are hundreds of us who had polio in the 1950s and still have symptoms such as muscle weakness and fatigue. Doctors don't know how to help. In fact, very few doctors seem to know what polio is or was! I hope you will consider writing about it in future issues. - Virginia Gabardi, Colorado Springs, CO
THE EDITOR RESPONDS: Thank you for your suggestion. We hope to cover post-polio syndrome in a future issue. In the meantime, you can consult the National Institute of Neurological Disorders and Stroke for more about post-polio syndrome.